Patients: What patients want from research, and why their involvement matters?
Research Involvement and Engagement UK
Richard Stephens is a survivor of two cancers and a heart emergency. He has participated in four clinical trials and several psycho-social and quality of life studies.
Richard Chairs the NCRI’s Consumer Forum and is the NCRI Consumer Lead. He serves on strategic groups for NIHR, NCRAS, MRC CTU, Genomics England and others. He sits on Cancer Research UK’s main funding committees, and was the patient representative on the Independent Cancer Taskforce that produced the 2015 Cancer Strategy for England, Achieving World Class Cancer Outcomes.
Richard was one of the founders of the AllTrials campaign and is a leading member of the useMYdata movement. He is the joint Editor-in-Chief of BioMed central’s Journal of Research Involvement and Engagement, and brings the “slightly uncertain voice of the partly-informed patient” to the Department of Health’s Patient Experience Advisory Group and also has a consultancy role with Astra-Zeneca.
These activities follow on from careers in journalism, teaching, local government (including award-winning innovative approaches to rent collection and to social housing allocation), and as a school governor specialising in turning around poorly-performing schools.
Univesity of Warwick and co-Editor-in-Chief of Research and Engagement
Sophie Staniszewska leads the Patient and Public Involvement (PPI) and Patient Experiences Programme at the RCN Research Institute, Warwick Medical School, University of Warwick. Previously Sophie was Director of Research at the National Centre for Involvement and Director of Graduate Studies in the School of Health and Social Studies. Sophie is a member of the National Quality Board Patient Experiences Sub-group. Sophie has carried out a wide range of studies. Sophie recently completed a scoping study for NICE which developed the Warwick Patient Experiences Framework that informed the NICE Patient Experiences Guidance. Sophie also led a systematic review of the impact of patient and public involvement on health and social care research, funded by the UKCRC. Sophie is currently working with EQUATOR to develop the first international guidance to enhance the quality of PPI reporting. Sophie also led the POPPY Project which examined parents' experiences of having a pre-term baby (www.poppy-project.org.uk). Sophie recently chaired the NICE Patient Experiences Guideline and Quality Standard. Sophie is a member of the Internal Methods Advisory Group at NICE. Sophie is also a member of the Research Excellence Framework 2014 Public Health, Health Services and Primary Care Panel. Until recently Sophie chaired the Evidence, Knowledge and Learning Group of INVOLVE and was a member of the Main Group of INVOLVE. Sophie is now an INVOLVE Associate having completed her term of office. Sophie is a member of the NETCC PPI Group. Sophie is also a member of the Health Technology Assessment International Patient/Citizen Involvement Steering Group and co-chairs the Methods and Impact Group. Sophie reviews for a range of funding bodies and international journals, is on the editorial board of the International Journal for Quality in HealthCare, Patient Experiences Journal, The Patient: Patient Centered Outcomes Research and supervises a number of PhD students.
Former Director of the National Cancer Intelligence Network and patient involvement champion, useMYdata
Chris is a renowned specialist in cancer data and information, but with a particular focus on patient involvement and patient power.
Chris was a founding member of the National Cancer Intelligence Network (NCIN), a partnership funded by a range of bodies, including the public sector and leading cancer charities, tasked with providing new insights and intelligence into cancer inequalities, diagnosis, care, outcomes and experience, putting patients at the heart of how their data is used.
In 2014 he was named as one of the Health Service Journal’s Top 50 Innovators in the NHS for his innovative and collaborative approach to patient empowerment, and also featured on BBC Radio 4’s Networking Nation series, where the NCIN was highlighted as a leading example of how best a network can operate.
Chris is currently working on the use MY data patient programme and remains passionate about actively involving patients in everything that is done in their name.
Prior to the NCIN, Chris worked on areas of national cancer programmes for 10 years, including 5 years as the National Coordinator for Cancer Registration in England, and internationally as part of an expert group on automated cancer registration, and of a European review team looking at registration in Europe.
Chris has a comprehensive background in health informatics, with a particular focus on cancer informatics. He has played a pivotal role in several national initiatives around health informatics to drive outcomes, not least the world-leading Routes to Diagnosis programme.
Public Involvement Lead, Research Authority, carer and editorial board, Research Involvement and Engagement
Jim provides leadership to the Health Research Authority on the involvement of patients and the public in health research [part time] as part of his work as advocate for patients in research. He has been a carer for close family with cancer and other health conditions for many years. His career has been spent in health research management across the commercial, public and voluntary sectors. His combined experiences have led to an interest in helping to ensure that patients and the public can make a contribution to the design, conduct and management of health research. Jim is currently involved as a public contributor in the work of Cancer Research UK and the National Institute for Health Research. His involvement in research also includes being a member of the Consumer Forum of the National Cancer Research Institute, Independent Cancer Patients’ Voice and Health and Care Research Wales’ Involving People Network.